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Celiac And Interstitial Cystitis
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Hi Ladies,

A quick question. A friend Kayla (17 yr old girl) was dx'ed IC awhile back. She went gluten free right away. All the symptoms went away. It was to good to be true right? Well she gave herself a gluten challenge by eating two chicken McNuggets. The symptoms came right back, she took the meds her dr. had prescribed (Prosed and sulfamethoxazole, one dose each). She now has very painful bumps on the back of her tongue. She took claritin which didn't help the painful bumps at all. She just took some acidolpholous (she has had thrush in the past from antibiotic use). I don't know what else I should be looking for or suggesting.

Thanks for your help

RA

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Her symptoms are so different from mine that I'm totally lost on wether this is a gluten reaction, a yeast reaction to the antibiotic or an allergic reaction to something (meds, foods, campfire smoke?). So anyone out there with IC that experienced painful bumps on the back of the tongue?

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Hi, I wondering if any of you also have interstitial cystitis. I have it and it seems that I have food related problems with that as well - of course it is a bunch of different foods that have nothing to do with gluten, like, well, soy and red wine to name a couple...(I have read that this is "normal" for people with IC). I got the interstim implant and that has helped a great deal, but still have issues with it when i eat or drink something "wrong." Anyway, I find it difficult to cut out gluten (dairy is a rough one too), and everything that affects my IC - there is a list of foods that are bad for IC and it includes almost everything one can imagine, of course except bread - ha, how is that for fun! If you can sympathize, please post so i don't feel so lonely. Of course, I never really feel lonely - this is such a great site!

I also have both IC and Celiac disease. I was taking Elmiron for about 6 months, until the manufacturer switched the coatings, making Elmiron NOT gluten free anymore. That was in mid-April 2009. It was during a refill that I finally figured it out. I called the manufacturer and they claimed they couldn't tell me what was in Elmiron, due to "proprietary information." (which is a bunch of crap!!!) Elmiron used to be gluten-free. Anyway, my IC symptoms went away, until September of this year. That's how long it took to undo the repair the Elmiron (when it was gluten-free) had done. Now the lining of my bladder is completely gone! I am in pain all the time. I can't leave the house for long, sometimes not at all. I'm quite depressed.

Help!!!!

-Beth

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Christie,

OM Goodness! Where were you when I was going through all of this too?! Glad I found you now! Like you, I also have IC, endometriosis, possible Celiac, and TMJ. I've done a lot of research on all these conditions. IC and endomet. are called the "Evil Twins," which means if you have one, chances are, you're bound to have the other two, which coincidentally, we both have! Are you currently taking any medications? I take 4 currently, three for IC, and Low-Ogestrel birth control pills for Endometriosis. I had a double surgery in December (which apparently is when you made this post!). My gynoc. burned away the mild endom. that I had, and my urologist extended my bladder. The first month, I was totally fine. I didn't have any pain, didn't have to go to the bathroom EVERY HOUR, etc. However, after I had my first period since the surgery, all of the symptoms came back! So discouraging! In March, I started taking birth control pills, which helped some, but was still experiencing pain, esp. more so during my period, and the bathroom issue was of course even worse too. In May, I talked to my gynoc. about simply not having a period anymore at all, until I wanted to start having kids. She fully supported my decision. I asked her if it would affect my ability to have children, and she said that my body would "remember," and that it would be fine. So now I'm period free! It REALLY has helped me, because endometriosis grows in the presence of estrogen, which increases in your body each time you have a period. It won't matter if you have multiple surgeries. They won't help if you keep having a period. Talk to your gynoc. and see what he or she says. Also, I'm currently in the process of waiting for test results for Celiac Disease. In the meantime, I've been drinking TONS of water, and I will also be gluten-free from now on! The medications that I take for IC alone are Elmiron (helps repair the lining of the bladder), Trimethoprim (keeps infection/burning pain away, and believe me, it does! For a week or so a few months ago, I went off of Trimethoprim to see if my pain symptoms had disappeared, and nope they had not! Had INTENSE burning sensation all weekend....felt like my insides were ON FIRE again!), and Vesicare (helps with frequency/urgency, and it definitely has. Don't have to get up to go to the bathroom in the middle of the night now! Can now go to the bathroom every 2-4 hours, instead of EVERY HOUR, unless I drink a lot of water. I'm pretty much pain-free too, except for occasional pain, and of course I still have pain in my upper left side! Hope this helps! :)

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Hello all,

I guess I should introduce myself. My name is Jane, and I have Celiac and IC. The doctor was trying to see if my bladder was ok with a ct scan and found a mass on my kidney. So now I have had part of one kidney removed. I have stuck to the gluten-free diet for almost a year. The IC diet is new and so inclusive of things i love to eat. However the pain from IC has become so severe I am afraid to eat or drink anything. The doc tried a parson's treatment, I thought I was going to die from it. The pain was worse than ever. What I am trying to find is one thing I can drink everyday to give my body the vitamins and nutrients it needs. Does anyone know something like slim fast, but gluten free? I sometimes don't know if i am tired from the surgery, the lack of food or the pain.

Please help if you can.

jane

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Hello all,

I guess I should introduce myself. My name is Jane, and I have Celiac and IC. The doctor was trying to see if my bladder was ok with a ct scan and found a mass on my kidney. So now I have had part of one kidney removed. I have stuck to the gluten-free diet for almost a year. The IC diet is new and so inclusive of things i love to eat. However the pain from IC has become so severe I am afraid to eat or drink anything. The doc tried a parson's treatment, I thought I was going to die from it. The pain was worse than ever. What I am trying to find is one thing I can drink everyday to give my body the vitamins and nutrients it needs. Does anyone know something like slim fast, but gluten free? I sometimes don't know if i am tired from the surgery, the lack of food or the pain.

Please help if you can.

jane

Jane,

This post is very old and the original poster and responders to it may not see it. Try posting your questions as a NEW topic so someone can read it and maybe help you out.

IH

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Hello all,

I guess I should introduce myself. My name is Jane, and I have Celiac and IC. The doctor was trying to see if my bladder was ok with a ct scan and found a mass on my kidney. So now I have had part of one kidney removed. I have stuck to the gluten-free diet for almost a year. The IC diet is new and so inclusive of things i love to eat. However the pain from IC has become so severe I am afraid to eat or drink anything. The doc tried a parson's treatment, I thought I was going to die from it. The pain was worse than ever. What I am trying to find is one thing I can drink everyday to give my body the vitamins and nutrients it needs. Does anyone know something like slim fast, but gluten free? I sometimes don't know if i am tired from the surgery, the lack of food or the pain.

Please help if you can.

jane

Jane- I can empathize, as I am sure many others here can. I have both celiac and IC. For me, going off gluten and dairy had the biggest affect on relieving my IC symptoms, but it took several months before that relief came, so dont be discouraged if you aren't seeing results quickly. Now, I am totally gluten free because of the celiac, and I limit dairy to very small amounts. if I have even a glass of milk, it triggers a flare, but a little cheese or ice cream doesn't seem to affect me much. Everyone is different as to what foods will cause a flare however, and unfortunately, it is very much trial and error. I did want to let you know about a shake mix you might want to try. it is called Lame Advertisement. I use it, and it is gluten free and very filling. It is also packed full of vitamins and amino acids. I also take the Lame Advertisement supplement called Ionix Supreme. Tastes dreadful, but is an excellent source of all of your B vitamins and is easily absorbed- and you only have to take an oz a day, so it isnt too awful! I have found it to be a real help in restoring my energy and stabilizing my moods. The shakes do contain dairy, so depending on how sensitive your IC is to dairy, that could be an issue. The amount that is in there doesn't bother me at least. It is an expensive product, but I feel it is worth every penny. My two kids both have celiac as well, and I give them both the shakes and the Ionix Supreme as well. Another thing that helped me was drinking comfrey tea. This is a controversial area, but I did the research and felt confident drinking it in moderation. it would bring relief from a bad flare within a half hour usually. I hope you find relief soon! it took about 7-8 months of being completely gluten free and dairy free, but I can honestly say any IC discomfort I have now is VERY minimal- whereas before, it was so severe I was in the bathroom 50-60 times a day, had awful pain, wasn't sure if I could continue to live like that. Don't give up hope!

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Jane- I can empathize, as I am sure many others here can. I have both celiac and IC. For me, going off gluten and dairy had the biggest affect on relieving my IC symptoms, but it took several months before that relief came, so dont be discouraged if you aren't seeing results quickly. Now, I am totally gluten free because of the celiac, and I limit dairy to very small amounts. if I have even a glass of milk, it triggers a flare, but a little cheese or ice cream doesn't seem to affect me much. Everyone is different as to what foods will cause a flare however, and unfortunately, it is very much trial and error. I did want to let you know about a shake mix you might want to try. it is called Lame Advertisement. I use it, and it is gluten free and very filling. It is also packed full of vitamins and amino acids. I also take the Lame Advertisement supplement called Ionix Supreme. Tastes dreadful, but is an excellent source of all of your B vitamins and is easily absorbed- and you only have to take an oz a day, so it isnt too awful! I have found it to be a real help in restoring my energy and stabilizing my moods. The shakes do contain dairy, so depending on how sensitive your IC is to dairy, that could be an issue. The amount that is in there doesn't bother me at least. It is an expensive product, but I feel it is worth every penny. My two kids both have celiac as well, and I give them both the shakes and the Ionix Supreme as well. Another thing that helped me was drinking comfrey tea. This is a controversial area, but I did the research and felt confident drinking it in moderation. it would bring relief from a bad flare within a half hour usually. I hope you find relief soon! it took about 7-8 months of being completely gluten free and dairy free, but I can honestly say any IC discomfort I have now is VERY minimal- whereas before, it was so severe I was in the bathroom 50-60 times a day, had awful pain, wasn't sure if I could continue to live like that. Don't give up hope!

Hah! I see the product I recommended was edited to read "lame advertisement" Too funny. well, if you would like the name of the product, feel free to PM me and I will let you know!

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Hi, I wondering if any of you also have interstitial cystitis. I have it and it seems that I have food related problems with that as well - of course it is a bunch of different foods that have nothing to do with gluten, like, well, soy and red wine to name a couple...(I have read that this is "normal" for people with IC). I got the interstim implant and that has helped a great deal, but still have issues with it when i eat or drink something "wrong." Anyway, I find it difficult to cut out gluten (dairy is a rough one too), and everything that affects my IC - there is a list of foods that are bad for IC and it includes almost everything one can imagine, of course except bread - ha, how is that for fun! If you can sympathize, please post so i don't feel so lonely. Of course, I never really feel lonely - this is such a great site!

Hi, I am new on here but I have to say, you hit the nail on one of my personal topics. I have Celiac Disease and Interstitial Cystitis. I am going nuts. I have been Gluten-Free for 10 years and have suffered with my bladder for YEARS. I was misdiagnosed by a Uro/Gyne in Feb. of 2010 with Bladder Cancer. I took the advice of the women on the Bladder Cancer board and saw a Urologist for a second opinion. Before he tested me he said, "I don't think it is cancer. I don't expect to find anything, really." Well, that made me feel like he, too, thought it was all in my head! After ANOTHER Cystoscopy, he dx me with IC...Oct. 2010. I am just thanking God it was not Bladder Cancer. I feel for all of those with that dx. Since the IC dx, I can't find anything to eat. I eat rice and Bob's Red Mill Oatmeal. I feel like I am starving. My nutrients are none. My hair is falling out now. Doesn't it seem like 3/4 of your gluten-free diet is gone when IC is dx??? Please, what can YOU eat? I also have Thyroid issues, gall bladder was removed, can't eat MSGs, soy, tyramines, or processed foods, and I have TMJ. Any ideas...anyone? :)

~T

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Hi, I am new on here but I have to say, you hit the nail on one of my personal topics. I have Celiac Disease and Interstitial Cystitis. I am going nuts. I have been Gluten-Free for 10 years and have suffered with my bladder for YEARS. I was misdiagnosed by a Uro/Gyne in Feb. of 2010 with Bladder Cancer. I took the advice of the women on the Bladder Cancer board and saw a Urologist for a second opinion. Before he tested me he said, "I don't think it is cancer. I don't expect to find anything, really." Well, that made me feel like he, too, thought it was all in my head! After ANOTHER Cystoscopy, he dx me with IC...Oct. 2010. I am just thanking God it was not Bladder Cancer. I feel for all of those with that dx. Since the IC dx, I can't find anything to eat. I eat rice and Bob's Red Mill Oatmeal. I feel like I am starving. My nutrients are none. My hair is falling out now. Doesn't it seem like 3/4 of your gluten-free diet is gone when IC is dx??? Please, what can YOU eat? I also have Thyroid issues, gall bladder was removed, can't eat MSGs, soy, tyramines, or processed foods, and I have TMJ. Any ideas...anyone? :)

~T

hi there- i am so new to the IC... dont even know if i have it- but highly suspect it... i too have Celiac and Thyroid disease- and IC seems to be common or related..

ive suspected IC before or a very very sensitive tiny bladder... but last fall i had my most recent UTI.. was pretty bad.. the Cipro worked immediately, but then afterwards- i kept feeling like i was getting another UTI- bacteria tests were negative... then i kept feeling like i was getting yeast infections (which i always get after antibiotics)- and kept treating and getting symptoms- all yeast tests were negative... now im repeatedly getting uti & yeast symptoms- and my bladder cant handle many things- especially blueberries of all things..???? strange...

anyways... im just learning, and hope i dont have it or have to avoid as much as you think you have to-

i was losing hair big time- i have Hashi & Graves- AND my iron was LOW.. have u had your iron & ferritin checked??? is your thyroid meds optimized???

i also found this the other day:

http://www.evenbetterhealth.com/interstitial-cystitis.php

i hope all these things help- i really cant afford to get more testing done, see more doctors... and really dont have the time or energy for additional problems and pain on top of the Celiac & Thyroid :angry:

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I see this is very old thread and there maybe new information on the site

I was diagnosed with IC 2 months ago

3 days after that was dx with C-Diff so that's what I have been dealing with for 2 months now

Going to take some time reading all this great info but wanted to get on a list for alerts if people are posting on the subject

Judy

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    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
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    • Perhaps you should consider asking for a GI referral.  You might just skip the blood tests and go directly to an endoscopy/biopsies while you are still consuming gluten.  It is the "gold" standard for a celiac diagnosis anyway!   Here's the deal with going gluten free.  You can do it.  It costs nothing, but you must give it six months or longer.  You'd need to think like a celiac, but it can be done!  I'll tell you my tale.  My hubby went gluten-free 15 years ago per the very poor advice of his GP/PCP and my allergist.  After a year of mistakes and learning, he got well.  It worked!  Thirteen years later, I was formally diagnosed.  (It was a shock as I was only anemic at the time.)  Hubby would be the first to say that I have had way more support from family, friends and medical.  I must say, it's nice to see those lab results.  It really helped me adhere to the diet in the beginning too.   So, you know your medical situation.  You must do what's best for you!   I hope you feel better soon!  
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    • also:  glutendude - i don't get it.  shouldn't it be glutenfreedude?  lolz i eat out few and far between.  most of the times i've been glutened it's been eating out.  this weekend i'm getting my bacon cheeseburger on at red robin  i always get my 'good' waitress - lucky, i guess, paula takes good care of me   and i will eat at bonefish but they have a limited 'safe' menu.  look for places that have the 'GiG'  training they know their stuff.  mellow mushroom, melting pot, california pizza kitchen, pf changs are all supposed to be trained that way.  they know to avoid cc and change their gloves, etc.  
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